Karen’s Story

Site created on December 19, 2019

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Newest Update

Journal entry by Karen Kosky

I’ve started a new post a few times the last week or so - and I’ve got to “Just do it” as Nike and my 15-year-old self would’ve said.

There’s really not much new to report. Maybe that’s why I’ve struggled to find a thing to write about. I had a scan two weeks ago. It came back just about the same as the last (many.) A few lung tumors, some small growth, nothing to prompt a change in treatment plan. That’s good. Except, well, continued chemo. Just finished round #66 (I think) Thursday. 
 
I’ve enjoyed the sun when it’s been out the last few weeks. I had a bit of a stretch of feeling less than chipper. Maybe a little to do with the gray & cloudy weather a few weeks ago. But maybe also that this spring I’ve been decently active - all good stuff - but it just wore me down.

Spring break with Bridget was wonderful. Nice mix of relaxing & seeing some east-coast sights. But I was behind the wheel more that week than I’d been in years. And I don’t love flying. So that stuff was a lot.

And the weeks since have been chemo sessions interspersed with baseball games (2 at a sub-40deg wet windy UIC field), church coffee hour prep and capital campaign meetings, yardwork, prep for a roofing project, and always the reading and learning about cancer genetics & trials.

My therapist passed on a great Ted Talk about how sickness and mood are inextricably linked. And especially chronic illness & mood. Think about the last time you had a flu. You probably felt like hunkering down under some blankets on the couch and napping with a mindless tv channel on in the background (which, essentially, is what every other Tuesday looks like for me, thank you very much.)  It seems somewhere in the middle of the bug you had, and the inflammation it caused, was a signal to your brain to just stay put. And you probably didn’t feel much like socializing - maybe just a hint of depression floated about.

Seems that many of us with chronic illness (not just cancer), live with that inflammation-driven signal to ‘just stay put’ all the time. Every day. And I can testify to that. While I was never a globe-trotting, party-hard, work all day, play all night kind of gal, I did have a much bigger life before cancer. And in the years since my diagnosis, I’ve felt my social walls closing in little by little. I can spend entire days at home, barely roaming farther than a mile radius when I’m forced to get outside with the dogs.

And the frustrating thing is, if I listen to that signal to ‘just stay put’, I don’t necessarily feel better. Restlessness and boredom still do creep in. But when I do put on my big girl pants and venture out (to the East Coast, camping, outings with friends, etc.), it also exhausts me. Overdoing it can make the stress/inflammation/depression cycle go into overtime.

There’s a Marvel movie spin-off show called Loki. Not my typical genre, but the kids & I binge-watched Marvel movies during COVID lockdown so that series always triggers a kind of twisted sentimentality in me. Anyways, in that show, there’s an unusually cruel punishment doled out to people who are deemed unalterable threats to the universe’s order. The person, or people, are captured in a sort of energy cube. The cube is shrunk until the people, well, disappear (fortunately for my general aversion to violence, they don’t actually show the smushing of flesh & bone.)

Life in this chronic illness-triggered ‘stay put’ tendency feels like being in that energy cube. If I do nothing, it feels like the cube will keep shrinking my world until, well, bad things happen. In this case, I can push back on the cube by getting out of my comfort zone, but I usually suffer some kind of whiplash - exhaustion, and maybe some depression.

So it’s a continuous balancing act. Enough rest and staying-put but also enough getting out & about to not feel trapped and isolated.

And yes, we all do that. I did that before cancer. But like everything else, it’s likely just a little *more*. Everyone suffers runny noses. Those of us on chemo who’ve lost hair, though, have *more* runny noses because hair= hair on head but also arm hair & leg hair & nose hairs! Everyone gets older & starts forgetting things. Those of us who’ve been through repeated cancer treatments just forget *more*. Everyone has aches and pains especially as we age. Those of us who get regular chemo or immunotherapy or who’ve had repeated radiation just suffer *more* aches and pains than we would normally.

That’s a lot for having not much to say. I will end, like I usually try to, on a good note. It’s a beautiful day. Mike & I are skipping church today to take a dog to “Bark in the Park” at the ball field where Josh’s team plays. And next week we fly out to Vermont to see Bridget one last time before she’s home for the summer. I’m going to lace up my shoes to get out for a brisk walk with the dogs before we go. Today I’ll stretch out that box a bit. The rest of this week I’ll lay low till we fly out Thursday. I’ll try to keep finding that balance. Hope you’re doing the same. Take care. Be well. Go soak up some springtime sun!
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